The infuriating experience of coronavirus testing, explained by a patient

Devin, a 35-year-old living in Chicago, woke up on Tuesday morning and felt sick.

He had body aches, a fever, and a dry cough. His doctor recommended he go to an emergency room that had access to the coronavirus test. Devin had reasons to think he could be at risk of the infection: he had been traveling in Southeast Asia for much of February. He had also broken his arm upon returning, putting him in contact with other patients at hospitals and doctors’ offices the week before his symptoms showed up.

At the hospital on Wednesday they tested him for the flu, but it came back negative. However, he was showing lung inflammation on an X-ray, so he answered questionnaires to assess his risk of having been infected by the coronavirus and his risk of developing a severe case of Covid-19.

But Devin noticed something that surprised him in the questions: they were very narrowly focused on whether he had been to China or Italy specifically or if he’d potentially come into contact with somebody already known to have the novel coronavirus. He didn’t meet the criteria for a test at that time, so they sent him home, the doctor even telling him he didn’t need to self-quarantine.

“I guess where I took issue with this diagnostic is it completely ignores the potential and the risk for community spread. There is no algorithm for determining that,” he told me. “If they had asked me, I could tell them I was in your ER. I was in a doctor’s office. I was at an ortho’s office. And I was at my PT’s office.”

Devin wasn’t convinced, and started letting people with whom he’d been in contact know about how he was feeling. He found out somebody at his physical therapist’s office has a father with lung cancer, exactly the kind of person most at risk from the Covid-19 disease.

Within 24 hours, the hospital called him: you should come back in and get tested for coronavirus. Devin got tested Thursday evening, and as of Saturday afternoon, he was still waiting for a result.

The scary part is we don’t know how many Devins — people with good reason to worry about coronavirus, but who have gone untested because they didn’t meet restrictive testing criteria — are out there.

As of Saturday, the United States had still tested less than 21,000 people, a far lower rate than most other countries. There are about 2,500 confirmed Covid-19 cases in the US as of March 14. But because so few people have been tested, the number of real cases could be much higher.

“Of course the catch-22 of that is hardly anybody is being tested, so how would you know?” said Devin. (He asked me to identify him by his first name only, given his employer’s role in his story.)

There were reasons for the criteria to be so rigid; tests have been in short supply for weeks. The US now has the capacity to perform 26,000 tests per day, as testing supply finally starts to catch up with demand after a slow start, according to the American Enterprise Institute’s tracker. As of Friday, the Illinois Department of Public Health was recommending doctors consider a patient’s symptoms as well as a few other select criteria (travel to affected areas, medical risk, and whether they live in or work at a health care facility) when deciding whether to order a test from the state lab.

But the number of tests is still vanishingly small compared to the potential scale of the problem. The head of the Ohio Department of Health, just a short stop over from Illinois, thinks as many as 100,000 of that state’s residents could be infected by the coronavirus.

Devin’s experience demonstrates the risk of undertesting. After his first ER visit, the doctor told him he didn’t need to self-quarantine. Devin took his own precautions, but others likely won’t be so careful.

There are other stories like this. Vox’s Brian Resnick spoke recently with a California physician assistant who had been trying to get a patient tested since late February because the patient had a chain of contact with someone who had tested positive for the coronavirus. That physician assistant hadn’t yet succeeded.

So long as America’s testing capacity is lacking, people like Devin could slip through the cracks. Below is our interview, edited and condensed for clarity and length.

Dylan Scott

You said you had been in Southeast Asia recently. Start me there.

Devin

I was there for about 2½ weeks. I got back the last Saturday of February, the 28th. I was in southern India for a week and then Manila, the capital of the Philippines, for a week, with a layover in Malaysia.

My company was very concerned about all this. They said if you don’t feel comfortable, don’t go. Also we had to change our flights four times. One flight went through Hong Kong, so that had to be changed. They were very proactive.

No one else I was traveling with has gotten sick or shown any symptoms. So there is a decent possibility I got this through community spread in Chicago.

Dylan Scott

So you get home at the end of February.

Devin

So I get home. The next day I break my elbow. It was beautiful in Chicago, in the 50s. I took a bike ride, and the Lakeshore Trail in Chicago has been really damaged by the lake coming up. I was trying to avoid a section that’d been damaged, and this kid jutted out from his parents. I had to choose between a pothole and the kid. I went with the pothole and broke my elbow and my nose at the base of the septum.

I went to the ER, which ends up being the ER I go back to for the [Covid-19] test twice. That’s Sunday, February 29. Monday, I call and make appointments. Tuesday I’m at my doctor’s office. Wednesday I’m at my orthopedic surgeon’s appointment.

Then fast forward to this past Monday, March 9. I have my first physical therapy session. Then Monday night is when I started not feeling well.

Dylan Scott

How are you feeling then?

Devin

At that point, I was feeling feverish and achy. Then I woke up Tuesday and I was full-blown sick. I’ve got the dry cough and all these other symptoms. I immediately called my doctor’s office. They took this very seriously and were trying to call around and get answers. They were super frustrated. They kept calling and not being able to find out anything.

So it took over 24 hours to finally get told I should go to one of the hospitals in Chicago that has the test kit, which also happens to be the same ER I’d been at for my elbow. So I go Wednesday evening.

They do a chest X-ray and it shows inflammation of the lungs, but not pneumonia. My fever had not been bad. It had been a low-grade fever. The problem is, about two hours before I went in, I’d taken Tylenol, which had knocked it down. So I wasn’t presenting a fever when I went there.

They did the X-ray. They did the flu swab, took some blood. The flu came back negative. The X-ray showed lung inflammation. The doctor actually called my cell phone so they could do the Illinois Department of Public Health questionnaire while I’m in the hospital, because they wanted to limit exposure. She was at a desk in the ER, calling me on the phone to do the questionnaire.

The questionnaire is for two algorithms: your risk of exposure and your risk of getting seriously ill.

The risk of exposure side is based on two things. Where you’ve traveled, which is very narrow, because it’s only taking into account the most high-risk places. Were you in China, Korea, Italy? The other exposure question is have you been around someone who is a known patient? Of course the catch-22 of that is hardly anybody is being tested, so how would you know?

Then the second question, I don’t have any underlying conditions. I wasn’t experiencing shortness of breath. So the risk of getting sick was fairly low.

I guess where I took issue with this diagnostic is it completely ignores the potential and the risk for community spread. There is no algorithm for determining that. If they had asked me, I could tell them I was in your ER. I was in a doctor’s office. I was at an ortho’s office. And I was at my PT’s office. I was also at a group gathering on Friday, it had about 30 people. I had a few friends over Friday night and we were in close quarters and one of them is a Chicago Public Schools teacher.

Dylan Scott

But they’re not asking you any of that in the diagnostic test?

Devin

No. There’s no algorithm about risk for community spread.

Dylan Scott

So you get through that questionnaire and then what happens?

Devin

I wait for about three hours. They come back. The doctor comes in only wearing a mask and says IDPH isn’t testing you. You don’t have coronavirus, you don’t have to self-quarantine.

I am fascinated by this kind of stuff, a layperson reading a lot of books about pandemics and stuff like that. I’m probably not quite your average patient. She says this to me and I think, ‘Okay, you don’t actually know that.’ A diagnostic was done to assess risk.

The discharge nurse comes in not even wearing a mask and I go home. I decided I was just gonna do some of my own contact tracing. Called the ortho office and the PT office, which ends up being a good thing because one of the people I’ve been in contact with, her dad has lung cancer. At this point, I don’t know, but I want to give you this information so you guys can do what you want with it.

Then Thursday, at about 6 pm, I get a call. They say that IDPH did a re-review of the charts and that they are starting to lessen the risk requirement.

Dylan Scott

Trying to test more people by lowering the risk threshold?

Devin

Yeah. So I should come in and be tested. I go back in. In the 24 hours since I’d been there, they’ve erected a barrier around the ER check-in desk. They’ve implemented a whole bunch of protocols, like no guests coming back in the ER, stuff like that. I got put back in my little isolation room. They take my vitals and then they did the nose and throat swab. I had a long conversation with the doctor about the fact that Wednesday they completely botched this.

Dylan Scott

Did they seem frustrated with the situation?

Devin

I mean, that ER was swamped. But they apologized and basically said, hey, even in the last 24 hours, you’ve seen the barriers put up and these precautions being taken. We’ve already had an additional training between then and now. They know they’ve got to do better. They’re trying.

I don’t fault them for the lack of test kits and bad diagnostics. But their handling of it afterward was pretty bad.

So now I’m just waiting to hear back. They said it was up to three days. Since then, I’ve just been self-quarantining and letting everybody know.